Monday, January 26, 2009

Home again, Home again, Gigity Jog.

Things are more calm now. Gordon is home and getting better, we go to the doctor handling his infection on Tuesday and the cardiologist for a stress test on Thursday. Josh had good counts so unless they drop this week (which is a real possibility) we will be going into the hospital on Friday for his next inpatient chemo. Of course calm here means that between Gordon and Joshua we have 5 doctors appointments, 4 other appointments, dogs to breed, and lots of paperwork to catch up on.
I am very grateful for the chance to focus on things and still have my partner and best friend to help. Lots of people say that our life is hard but truly we are very blessed. Someone told us that 9 out of 10 people that went through what Gordon did do not survive. We know many children with Josh's diagnosis that can't walk without a walker, or have shunts. No matter what the future holds today is great! We are living and trying to have fun! We are together! We are blessed!

Thursday, January 22, 2009

Deja Vue (did I spell that right?)

OK we are back were we started and Gordon is in the hospital again. His heart is fine this time but he is still in pretty serious condition. When he left the hospital on Monday they gave him a flu shot and a pneumonia shot. OK, this is one in a million, he got an infection at the site of the injection and it spread to his blood. Oh, and he has pneumonia too. Needless to say the doctor at the urgent care freaked when they got his labs back. The doctor there told us it was the highest white count he had seen. The good news is that he is doing much better now that he is on antibiotics. He is still exhausted and really out of it but if you had seen him at home it is an improvement! He will be in the hospital till at least Saturday and then they will see if he is ready to go or needs more antibiotics. I am a little worried, the site of the infection is getting larger but I know they are watching and I will make sure the doctor looks at it tomorrow.
I feel bad for him he is really hammered, also I am so tired of things going wrong, and I am trying to keep things light for the kids.

We go to the hospital Friday to check Joshua's counts and I am praying they are OK, I worry about him getting sick now. I am very tired so I had better sign off but keep praying for us, we are trying to keep it together and need all the help we can get...........

Sunday, January 18, 2009

It's Gordon's Turn

OK, so I know this is Joshua's blog but I am hoping to use this to get the word out. Gordon is in the hospital today. They are moving him out of ICU to a cardiac floor today so he is finally stable. Maybe I had better back up and start from the beginning.
Yesterday afternoon Gordon started feeling that his heart was not beating in rhythm. It is called atrial fibrillation. He has had this before but it has been a long time. Well he did not want to go to the hospital but I was worried so I insisted he get a blessing. Well one of the 2 men from our church who came was Brother Cameron. Lucky (OK just one of many blessings we had last night) for us he is a doctor. So after the blessing he checks his pulse and says that he needed to go to the ER right away. With his insistence Gordon agreed to go. Once there the doctor in the ER decided to cardiovert him with paddles. They gave him a pain med and hit him. No warning, nothing. When we told brother Cameron he was shocked, he couldn't believe that they did not put him out for this. It was frightening for me and painful for Gordon. However he dropped from 150 beats to 88 per minute. So the ER felt he was OK and they were going to send us home when things went from bad to worse. About 20 minutes after the shock Gordon told me he thought he was "fading". I looked at the heart monitor and saw 23 beats, 20 beats, and flat line. I yelled for the nurse that his heart stopped and they came running. The doctor felt for a carotid pulse and said his heart has stopped and to begin CPR and bag him. They were preparing to intubate and everything but he came back in about 30 seconds and they got him stabilized. By now I am freaked out and he is very confused. He did not realize what had happened and kept telling them he was ready to go home. Needless to say I was not OK with that. Well that brings us to today, he is out of ICU and on the cardiac floor and doing extensive testing. Even the cardiologist says that what happened is very rare and they need to figure out why his heart stopped. He just finished an echo cardiogram, which is a big word for an ultrasound of his heart. I was proud to say I recognized the aorta, left ventricle, and two valves. Tomorrow he is scheduled for a stress test and a nuclear stress test. They have taken tons of blood and are checking cholesterol, hypertension, diabetes. I really like this doctor because he is thorough and cautious. He is waiting for every test before he decides what to do. We have heard everything from pacing to medicine to an automatic implanted cardiac defibrillator. One thing I like is we will have answers tomorrow so that is good, I can't take waiting at this point.
Now, on to the important stuff: BLESSINGS
1. Brother Cameron and priesthood blessings in general
2. Going to the ER and not having this happen at home (they told us he would have died)
3. Being able to call the Bishop and not be alone when I was so very frightened
4. Health insurance (became active January 1)
5. Good doctors, I can't say enough about how impressed I am with the cardiologist.
6. Another day together (I will never let him go to sleep again without telling him I love him.
7. A great ward, they have rallied and taken the children in without question
8. Sister Flores who stayed most of the night last night and did my dishes
9. Family who fasted today for us.
10. Just the knowledge that no matter what we will always be together

I will keep everyone posted but right now we are just waiting for a plan to move forward and I am very excited because he is very cranky and I see that as a good sign. Poor Gordon, his chest really hurts, just the shock would have been enough but the CPR did him in.

Tuesday, January 13, 2009

Chemo and Coccoa

Well Monday was a long day but we are doing ok. We spent 4 hours trying to swallow a pill and Joshua worked really hard at it but it was just too much. Finally they broke it in a syrup and he got it down. He is not feeling bad now so we are counting ourselves lucky and I am very proud of how hard he worked. He wanted to do it and never stopped trying. We let him pick 2 webkinz for the hard work he did and so that he would not see it as a failure but a success.

I also wanted to tell you a story that happened last Monday. We went to the Mcdonalds for family night and had a blast. They had free Hot Chocolate and face painting. The kids loved it and the face painter took a shine to Joshua. He talked her into painting his head and I thought you would love to see the pictures. As hard as things are Joshua never lets it get him down. I am so grateful to the face painter for caring about Josh. It is wonderful to see him laugh and be silly and just being a kid. Oh, if anybody is interested in how these things relate, Josh used coccoa to try and swallow the pills. He really likes it!

Sunday, January 11, 2009

The Bomb and the Fallout

Well, Joshua has been doing so well this cycle but I am not surprised by this news. When he was in the hospital last time there is one chemo that he takes by mouth but he kept throwing it up. The nurse finally came in and said the doctor told her that it was a maintance dose and they were just going to skip it. Well I mentioned it to the oncologist we saw in the clinic the next week and he said that it was important and that he should have had it but it was too late and we would just worry about taking next cycle. Well when we went to the clinic this Friday they dropped a bomb. Doctor Wolff, the head of the department found out about all this and freaked out. He said that that chemo was very important and we have to get it down. Even though we are 3 weeks out he still wants Joshua to take it. This is troubling on several levels. One he still has the problem of taking it, he gets very upset about taking pills now. Also it will give him nausea for a day or two (bummer) but the biggest thing is that this is the drug that kills his counts and makes him so weak and tired. AND the count drop will happen 2-3 weeks out so this will affect his next cycle, it may be delayed if his counts do not rebound fast enough. We are going to the clinic in the morning to take this chemo. I am giving him anti nausea to try and help and I am insisting that the counselor that has begun working with him be present to help. I will say that I think that this has all been a blessing for him from Heavenly Father. Everybody at our house has had a cold and cough and he had it too. If he had gotten that chemo he could have gotten very sick and been in the hospital so I think that this delay was heaven sent to protect him. I just hope tomorrow goes well and he doesn't get too weak from this. We will have to see. Meantime we appreciate your prayers and hope that all is well with you. I will post later in the week. To be honest, the longer it takes for me to get another post in the harder of a time he is having, I really have to focus on him when he is weak.

Sunday, January 4, 2009

Wii Fit and other Health News

Ok we are officially Wii fit junkies! Joshua is a great yoga fan and he is pretty good at it too. We all love the balance games and Josh and his Dad run together. We are working out as a family about 5 days a week between 20 and 30 minutes each. The fun thing is that everybody watches and cheers for each other. Dorothy loves to tell me "Good try mom" (that is because my scores are behind Josh and sometimes Dad's) It sounds corny but it is a family activity and everybody has fun. I have to say I never wanted a video game system but the Wii is one of the best things to happen to us and the greatest gift. When Joshua is tired and down he can really get a pick me up by playing games with Teddy and he moves alot more. I am all for the belief that exercise releases endorfins (spellling) and that can only help.
On to other health news, Josh has a cold but his counts have been up enough that he is ok. This week is when he should drop but I am waiting to see because they lowered his cisplanin level and maybe it will be better. We have been a little off schedule but we go this Friday for the last outpatient chemo of this cycle. The next cycle starts at the end of January. It is truly a miracle that he has gotten this far in treatment without a major health scare. We are blessed and I know that the many prayers on his and our behalf have made the difference. I am looking at this new year with excitement and hope that we will get to a better place and our family can begin to move forward. I hope that everybody can have a new year filled with hope and happiness.